(February 2016) In the United States, the vast majority of care that allows
older people to live in their own homes is provided by
family members who do not receive pay for their services.
As the older share of the population increases and people
live longer with chronic disabling conditions, particularly
dementia, meeting the care needs of older Americans will
become more challenging for families.
This report highlights recent National Institute on Aging-supported
research on the impact of caregiving on family
members, the dynamics of caregiving within extended
families, and the future need and availability of family care.
As policies deemphasize nursing home care in favor of
community-based long-term support services, a better
understanding of the family’s central role in caregiving is
needed. This perspective can help policymakers, health care
providers, and planners identify and implement strategies
that better meet the care needs of older Americans and
improve the lives of the family members who care for them.
Caregiver Availability and Constraints
A variety of trends have contributed to a widening gap
between older Americans’ need for care and the availability
of family members to provide that care, raising the potential
for growing unmet needs, a heavier burden on individual
caregivers, and increased demand for paid care. The combined
effects of delayed childbearing and longer life expectancy
mean more adults in later-middle age may be “sandwiched”
between the competing demands of their children
and those of their aging parents and parents-in-law. Women—who have traditionally served as parent care providers—are
more likely to be employed than in previous generations,
limiting their availability, and increasing their time constraints.
Using the nationally representative Panel Survey of
Income Dynamics (PSID), Wiemers and Bianchi (2015)
showed a 20 percent increase between 1988 and 2007 in the
share of women ages 45 to 64 who had both children and
living parents or parents-in-law. One in 10 women in this
age group provided significant parental care and either financial
assistance or housing (within their homes for one year or
more) to both an adult child
(age 25 or older) and a
parent during the period.
Supporting multiple generations
“may affect well-being
in retirement if women
decrease labor supply to care
for parents or if money transfers
to children are made at
the expense of retirement savings,” the researchers argue.
Adults in their 50s, 60s, and 70s are more likely than
those in previous generations to have divorced, increasing
their likelihood of reaching old age without a spouse to
assume the role of caregiver. Divorce also has implications
for whether older adults will receive care from their children.
In particular, divorce and remarriage may weaken adult
children’s sense of obligation to provide elder care,
particularly for fathers with whom they did not reside and
for stepparents (Silverstein and Giarrusso 2010).
Taking a variety of trends into account including divorce,
low fertility, and rising life expectancy, Ryan and colleagues
(2012) created a model of the baby boom population to
examine the future availability of family support. The model,
based on census data and findings from the nationally
representative Health and Retirement Study (HRS), allowed
researchers to estimate how many baby boomers would have
the types of family members who are the most common care
providers—a living spouse or an adult child within 10 miles.
The projections show that the share of 75-year-olds without
the most common care providers will increase substantially
between 2010 and 2030. Given the size of the baby boom
population, the number of 75-year-olds without a spouse
could more than double from roughly 875,000 in 2010 to
1.8 million in 2030, and those without an adult child
nearby could increase by a multiple of six during that
time—from about 100,000 to more than 600,000. The
researchers suggest that baby boomers may need to rely on
paid care providers or nontraditional caregivers such as
siblings or stepchildren. Unmarried women with few
economic resources are likely to be particularly
disadvantaged by not having a spouse to provide care.
To address this widening care gap, researchers argue for
expanding long-term care insurance, designing aging-friendly
neighborhoods, and planning for an increased
demand for paid care services.
Another way to meet older adults’ care needs is to better
involve grown children who live at a distance from their
parents, proposes Piette and
colleagues (2010). Their
analysis of HRS data showed
that one in three chronically
ill older adults had no
children nearby but did have
adult children living
elsewhere. And three in four
grown children were in
frequent contact with their aging parents despite distance,
through phone calls or visits (especially those who lived
within a one-hour drive). More than half of the older adults
said they could rely on their children if they had a serious
problem and that their relationships were amicable.
Involving out-of-town adult children in parents’ medical
care and medication management is one way to better meet
the needs of this group of chronically ill older people, the
Satariano, Scharlach, and Lindeman (2014) identify a
wide range of new technologies that can support older
adults and their caregivers, such as electronic medication
reminders and ingestible devices to improve medication
compliance, and wearable sensors that immediately report
abrupt movements related to fall or injury. They recommend
that research on the safety and effectiveness of these devices
include input from caregivers and give special attention to
economic barriers to their use.
Understanding the Impact of Caregiving
on Family Members
Providing uncompensated care for a spouse or parent
living with physical limitations can be both rewarding
and stressful, and new research has helped identify how—
and under what circumstances—providing care to an
older relative is beneficial or harmful to the care provider’s
Roth, Fredman, and Haley (2015) examined five studies
that followed groups of people over time and found that
those who became caregivers tended to live longer and
had lower mortality rates than similar noncaregivers. The researchers noted that “most caregivers also report
benefits from caregiving, and many report little or no
caregiving-related strain.” In one of those studies, Brown
and colleagues (2009) tracked more than 3,300 married
people ages 50 and older for eight years using HRS data.
They found that those who spent 14 or more hours
weekly caring for a spouse had a lower risk of death than
otherwise comparable non-caregivers.
But other evidence indicates that prolonged caregiving
for a spouse can negatively affect physical and mental health.
Two recent studies based on eight years of HRS data tracked
older married people who did not have high blood pressure
or cardiovascular disease (CVD) at the beginning of the
study (Capistrant, Moon, and Glymour 2012; and
Capistrant et al. 2012). Caregiving for 14 hours or more
weekly for two or more years doubled the risk of CVD onset and significantly increased the risk of developing high blood
pressure compared to other similar adults who were not caregivers.
Becoming a caregiver for a spouse (14 hours per week
or more) also significantly increased an older adult’s risk of
depression, according to another study of married HRS participants
(Capistrant, Berkman, and Glymour 2014). But
long-term caregiving (for two or more years) did not elevate
the risks further, suggesting that grief related to experiencing
a spouse’s functional decline rather than the long-term “wear
and tear” of caregiving may be at the root of depression.
New findings from the nationally representative 2011
National Study of Caregiving offer a window into how caregivers
experience their roles and which caregivers might be at
risk of debilitating stress. This study collected information
on the entire network of caregivers of each adult age 65 or
older with activity limitations identified as part of the 2011
National Health and Aging Trends Study (NHATS), making
it more comprehensive than previous large studies. Nine out
of 10 informal caregivers are family members, mainly spouses
or adult children (Spillman et al. 2014).
In interviews, nearly two out of three caregivers rated
their caregiving experience as largely positive, pointing to
benefits such as feeling closer to the care recipient and
assured that the recipient was receiving high-quality care
(Spillman et al. 2014). But one in 10 caregivers found caregiving
a negative experience overall. Additionally, one in four
caregivers surveyed said caregiving took an emotional toll
and about one in seven cited either financial difficulties or
physical problems related to their caregiving responsibilities.
About one in six caregivers told researchers that they had
more than they can handle, were exhausted at the end of the
day, or had little personal time.
Those who experienced caregiving as negative and stressful
tended to care for recipients with greater limitations or
with dementia symptoms, provided more hours of care, or
had health problems of their own. Specifically, caregivers
with symptoms of depression and anxiety as well as those
with their own physical limitations were much more likely
to experience caregiving as negative and stressful.
Researchers are gaining a better understanding of how the
stress and time demands of intensive caregiving may weaken
the immune system and increase the risk of accelerated aging
by examining telomeres—structures found on the ends of
chromosomes that protect against DNA damage. Over the
past decade, a growing body of research has identified links
between shorter telomeres and increased risks for depression
and for a number of chronic diseases, including CVD, some
cancers, and diabetes. Researchers have documented that
caregivers experiencing the greatest stress have shorter telomeres
than other caregivers, adding to evidence that chronic
stress affects caregivers’ bodies at the genetic and molecular
level (Litzelman et al. 2014). Another study that examined
differences in telomeres suggests that the chronic stress
spouses and adult children experience while caring for
Alzheimer’s disease patients may shorten the caregivers’ lives
by as much as four to eight years (Damjanovic et al. 2007).
Caregiving Patterns Within Families
For an older married person living with a disability, the
spouse is usually at the forefront of care activities. And traditionally,
parents have tended to rely on daughters (and
daughters-in-law) for more care than sons. Recent studies
examining the dynamics of elder care within families show
how gender and proximity continue to influence who makes
up an older person’s network of caregivers.
Wives tended to be the sole care providers for their
husbands no matter how much personal care the men
needed, according to analysis of the HRS-related Asset and
Health Dynamics Among the Oldest Old (AHEAD) study,
which examined more than 7,000 adults ages 70 and older
not living in nursing homes in the early 1990s (Feld et al.
2010). But the more functional limitations a wife had, the
less likely her husband was her only caregiver and the more
likely others helped provide her care, particularly daughters.
This difference in who provides care for married men and
women may reflect the fact that many wives are younger
than their husbands and are often less disabled. Hands-on caregiving is frequently central to a woman’s identity and
may cause her to resist seeking or accepting help, suggest
Feld and colleagues (2010). Another study, based on HRS
data, showed that adult children tend to be involved in their
mothers’ care no matter what their fathers’ health level, but
are much more likely to provide care for their fathers after
their mothers’ death (Noël-Miller 2010).
If a couple has both sons and daughters, the daughters are
much more likely to become their mother’s primary caregivers,
underscoring the “primacy of the mother-daughter tie,”
report Leopold, Raab, and Engelhart (2014). Their analysis
of HRS data tracked 2,400 previously independent adults
and their grown children over a decade. Geography was the
main factor determining which adult child provided care
when a parent began needing assistance; caregivers’ work and
family constraints had somewhat less influence. Other factors
influencing caregiver selection included parent expectations,
frequency of contact before the caregiving need arose,
and whether the parent had provided financial assistance to
the adult child or made the child a beneficiary of a will.
Among siblings, daughters and grown children living in
close proximity to parents were more likely to be continuous
care providers, according to another HRS-based study that
tracked changes in primary caregivers over a two-year period
(Szinovacz and Davey 2013). Parents were more likely to
experience a switch in caregivers if they lived alone, had more
sons than daughters, or had a higher number of children
(and thus more alternative caregivers). The researchers
found that the choice of a primary caregiver had more to
do with expected gender norms and availability than adult
children’s competing obligations such as work or family.
The researchers point out that society has traditionally
expected daughters to care for their parents and argue that
it might be “psychologically more costly for women to
decrease their care commitments,” despite the burden or
conflicts they may experience.
Economics of Caregiving
The dollar value of the informal care that family and
friends provide for older Americans totals an estimated $522
billion a year—more than total Medicaid spending ($449
billion in 2014), according to Chari and colleagues (2015).
The researchers used new data from the 2011 and 2012
American Time Use Survey—which uses a relatively broad
definition of elder care—to calculate the monetary value of
the time uncompensated caregivers gave up in order to
provide care. Replacing that care with unskilled paid care at
minimum wage would cost $221 billion, while replacing it
with skilled nursing care would cost $642 billion annually.
Because most caregivers are employed, “the bulk of the
economic burden of elderly care is shouldered by working
adults,” the researchers argue.
Caregiving responsibilities appear to influence labor force
participation, according to a study based on HRS data (Van
Houtven, Coe, and Skira 2013). Providing personal care
assistance to a parent slightly reduced men’s likelihood of
working and may lead employed women to work fewer
hours. The researchers suggest that women may seek lowerpaying
jobs with more flexibility to accommodate caregiving.
Among older workers who left a full-time position, taking
on new caregiving responsibilities appeared to act as a barrier
to working part time, according to Carr and Kail’s analysis
of HRS data (2012). The more caregiving responsibilities
the individuals had, the less likely they were to work parttime.
“Providing support to new caregivers as they leave fulltime
work may help them remain engaged in the workforce
longer,” the authors suggest.
To estimate the impact of parent care on adult daughters’
current and future labor force participation and earnings,
Skira (2015) created a model that accounts for declining
parental health, the impact of a leave on daughters’ work history
and experience, and the availability of job offers afterward.
Incorporating data from HRS, she found that after taking
an employment leave or cutting hours to provide parental
care, the chances are low that adult daughters will return to
work or increase their work hours. “Women who leave work
forgo experience and the associated wage returns and also face
a lower expected wage if they return to work,” she writes.
The model suggests that the overall median cost to a woman
in her mid-50s who leaves work is about $165,000 over two
years, about equal to the cost of two years of nursing home
care. This estimate is many times higher than estimates that
only take into account the cost of lost wages.
Family caregivers provide the majority of support that allows
older adults with disabilities to live independently and avoid
costly nursing home care. The estimated dollar value of
uncompensated family care overshadows many large federal
As the disproportionately large baby boom generation
ages, the gap between elder care needs and available caregivers
will widen dramatically. In 2010, there were seven potential
caregivers ages 45 to 64 (the age group of the average
family caregiver) for every person age 80 and older (the age
group most likely to have a disability) (Redfoot, Feinberg,
and Houser 2013). That ratio is projected to drop to 4 to 1
by 2030 and bottom out at 3 to 1 in 2050 when the entire
baby boom generation passes the age 80 milestone. The
shrinking pool of potential caregivers reflects the combined
impact of lower fertility and longer life expectancy; the former
reduces the number of adult children and grandchildren
that an older person can turn to for care and the latter
increases the length of time individuals may need care.
This demographic shift is occurring alongside other trends
that also limit the availability of potential caregivers, including
an increased share of employed women and caregiving
expectations weakened by divorce.
To meet the growing care needs of older people, researchers
underscore the importance of anticipating a growing
demand for paid care services and designing neighborhoods
that allow older people with disabilities to age in place more
easily. Policies that enable employed caregivers to manage
their competing roles are key to keeping families from seeking
nursing home care for the older adults with functional
limitations. Researchers also point to innovative approaches,
such as designing ways to involve adult children living at a
distance in managing their elderly parents’ health care.
New surveys document high levels of unmet care needs,
particularly among older people with low incomes. New data
on caregivers identify those who face particularly high caregiving
burdens, such as those caring for older people with
dementia or more mild cognitive impairment. These new
data can guide policymakers and planners as they target
home-based support services and caregiver assistance programs.
Indeed, policies that improve long-term care services
and supports, and reduce unmet needs, could benefit both
older adults and their caregivers, now and in the future.
Paola Scommegna is a senior writer at PRB.
Please refer to PDF for references.